Wednesday, October 29, 2008

The Beginning Is the End Is the Beginning

The good:

I'm back! Actually, I've been home since last Friday, trying to readjust.

The bad:

The reason for my discharge and transfer back to my old hospital is because although the transplant itself was an awesome success by any measure, I haven't gone into remission.

So what does this mean? Well, there's a chance that I'll develop Graft vs. Host Disease (GvHD) which might attack the leukemic cells. But frankly there are too many ifs in that statement, and there's no guarantee it would wipe it all out, as far as I know.

The ugly:

I asked one of my hematologists in Ottawa how much time he figured I had. He said less than a year. I asked the same question of my hematologist today, and she said weeks, maybe months.

Those are the facts about the leukemia. I have a lot more to write, but I started today about twelve hours ago by collapsing and needing to be be brought in to the hospital by ambulance. I'm quite tired. I have just enough energy to ask a favour. Could thouse of you who are on mailing lists I'm on (or used to be on) please post this? I don't have the energy to go to PWAC-L, the various SIGGRAPH lists, CE-L, and so on. You'd really be helping me out a lot. Thanks.

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Thursday, October 23, 2008

It's Been a Hard Day's Fortnight

It was on the evening of Day Zero—my second, not my first—that things started to go south. The chemo kicked in, my blood counts dropped, and I generally started to feel like crap.

Partly because of the time passed, and partly because of my condition at the time, I don't remember the exact chronology of what happened when. So what follows is a loose rundown of approximately the last two weeks of September:

- I ran a couple of fevers for a while, which probably wasn't helped by my tendency to wrap myself in my blankets like a tortilla while sleeping. In my defense, the room has something of a draft that is not at all fun at night.

- As was to be expected, I slept a lot. What I didn't expect was how demanding my body would be in its desire for sleep. More than once I'd be doing something innocuous, like, say, deciding what to eat first from my lunch tray, and I'd fall asleep for anywhere from five minutes to half an hour. Then I'd wake up, realize what happened, go back to trying to decide—and I'd nod off again. Once, I even woke up partway through a transfusion I had no idea had been started.

(Speaking of which, for over a month I've been keeping it in my head to mention that I'd had another platelet transfusion. Current count: 42 blood, 14 platelet)

- Eating became an issue at this point because my taste buds were just beginning to regard food with suspicion—I'd sometimes feel slightly ill just at the thought of certain foods. Rather than wait for things to get out of hand, I asked for a nasogastric feed tube (a tube that goes in one nostril and down into the stomach; not unbearable to put in, but I'm not lining up to do it again.) It turned out my timing was excellent as I got my first mucusitis-induced mouth sore, in the back of my throat no less, that evening.

- My right leg, which had been starting to cause trouble even before I came to Ottawa, got much worse. It swelled to a shocking degree, eventually growing to more than twice the size of my also-swollen left leg. I lost track of how many baffled doctors looked it over. An ultrasound and CT scan revealed nothing, but an MRI eventually showed an abscess. But what caused that,or for that matter the swelling? Since I was already receiving a battery of antibiotics, a "wait and see" approach was taken, which has mostly worked thus far.

- Spending so much time in bed wreaked havoc on my already diminishing muscle tone. By the end of the month I needed a cane, walker or wheelchair to get around, if my chemo-induced fatigue relented in the first place. More telling were the simple things I couldn't do: lifting the MacBook with one hand was risky, with two was a chore; I needed help showering; even opening a can of Ensure was impossible to do on my own.

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Sunday, October 19, 2008

Why Does My Heart Feel So Bad, Parts 2 and 3 of 3

Finally, the belated sequels.

Part 2:

I can't even stay out of trouble 24 hours. I was getting my early-morning vitals (about 4 a.m.) taken and chatting with the nurse when I felt it starting to happen again.

"Kim. Check my heart rate again, please?"

And in a few minutes, the RACE team was back in here, I had a bunch of extra wires connected to me, and I was yet again explaining my cardiac history.

Seeing that the previous doctor had gotten my heart rate down using just beta and alpha blockers, this doctor opted to try that as a strategy rather than put me through the adenosine.

I appreciated the effort, but it wasn't to be. The first dose was the most effective, dropping my pulse by about 20. Then it was just diminishing returns: he used up the rest of his store bringing it down another 20.

So, hello, adenosine. I asked for my mom to be in the room with me and gripped her hand as the familiar but unwelcome crushing sensation returned. (It wasn't as intense this time, but it did last longer than earlier.) Finally, my heart rate returned to normal, and consequently everything else around here did too.

Part 3:

After I wrote Part 1 but before I could finish Part 2 (again, within 24 hours of Part 2; this time Vicky was with me instead of my mom), I had a third incident. It was almost boring. I was connected to two pulse/oxygen saturation monitors and two blood pressure machines again, as well as an EKG and yadda yadda. As RACE members filed in I said hi to the one person who had been present each time (man, I don't want her hours, I thought).

Before Vicky moved her chair out of the way, she surreptitiously handed me the PSP and whispered, "Put music on." It was still on "The Healing Place," so I pressed Play and put it to the side of my head.

Then the doctor showed up and he read through my chart. Based on the previous incident he was all set to go with adenosine again, and I anxiously pointed out that adenosine only worked the second time. As we talked about the recent incidents (and, of course, my previous history again) someone piped up: my heart rate had gone down on its own. The doc hit me with a few beta blockers to bring things down to an even more comfortable level, and after some observation they left.

I joked that it was David Sylvian that did the trick, but after a few moments' thought I realized this is the way these incidents usually happen to me.

Postscript: Over the next few days I was visited several times by cardiology and RACE, and both talked about temporary dietary restrictions, of sorts: no caffeine, and no excitement -- meaning, nothing that would get my heart racing, which might lead to tachycardia.

The first is no big deal (I've had the same restriction since March, when my reflux started), but the other two--? No Battlestar Galactica finale. No Macross Frontier. No Gatchaman, which was just getting to the good part. And don't even get me started on music restrictions. Sigh.

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Friday, October 03, 2008

Why Does My Heart Feel So Bad, Part 1 of 2

Woke up yesterday morning with no real plans except relaxing (the day before was something of an ordeal) and working with my physiotherapist. For a while, that was pretty much the case; I spoke with various visiting members of the team (showing off my ever-leaner right leg and complaining about my new chest pains), watched Gatchaman episodes, burned a CD to get through the boredom of an upcoming MRI, things like that.

Around noon things got a little too exciting. Several nurses had been trying to clear out a blockage in my feeding tube, with the fear that the visible blockage hid stuff farther up that might be far harder to remove, possibly necessitating the tube's removal and reinsertion. I felt a familiar sensation in my chest, on top of the various pains that made it hard to speak.

"Katie? Could you... check... my heart rate?"

Many of the nurses here check pulses the old-fashioned way, by holding your wrist. When she realized how fast my pulse was going, she tried to use one of the machines—only it couldn't read pulses that fast, either. Eventually they were able to get a reading of about 220, and I found myself explaining my history of tachycardia again.

By now a good deal of time had passed, and my heart wasn't slowing down. Katie told me they were going to call the RACE (Rapid Assessment of Critical Events) team.

Soon, my transplant physician showed up, and gave me a once-over physical exam, and asked a few more questions. Just then, my not terribly large room just filled with people and equipment. An EKG, a heart monitor and a blood pressure machine were hooked up to me to provide continuous testing before, during and after treatment. I was a complete mess of wires and tubes.

Once everything was ready, I was told what the present course of treatment was. They were going to inject me with adenosine and flush the line over about six seconds, which would get the complete dose into me in moments. What it would do was, essentially, stop my heart for a few seconds; when it restarted, the part of my cardiovascular system that regulates things would restart it at its regular rate.

"Until your heart restarts, you'll feel pretty awful," said Tom, the RACE doctor who would be doing this to me with a smile. At the same moment, I was asking, "What will this feel like?"

"There'll be a crushing sensation on your chest for about 3-5 seconds. If it hasn't restarted by then, you'll pass out until it does. It usually isn't more than 10 seconds."

What could I say? I had long passed the point where this was a danger to me. A distal (lower) port was used on one of the lines, and Tom went to town. Almost instantly I had trouble breathing, as invisible rhinos sat on my chest. I knew I wouldn't last much longer, when suddenly I felt my heart beating again (oddly, I'd never felt it not beating—but apparently it had).

Everyone's happiness was short-lived when someone noticed the truth: my heart rate had returned at the same rate as before!

Tom went off to confer with some other team members, leaving those of us in the room to talk amongst ourselves, organize things a bit, and make small talk. While doing those things I also listened to/felt the strange polyrhythm of the various devices attached to me.

Tom came back and gave me the new plan of action, which was remarkably like the old plan of action—only preceded by beta blockers and possibly alpha blockers to reduce my heart rate before hitting me with the terrible stuff.

So I braced myself, and we started the process. I got the first injection of beta blockers, and there was a wait as everyone who could see the monitor (i.e. everyone except me) looked at it intently and compared it to whatever they needed to compare it to. Eventually I noticed that no one was mentioning the terrible stuff anymore. Tom turned to me and said, "Quick, think of the most relaxing thing ever!"

I turned to Katie and said, "Quick, pass me my PSP!", fired up David Sylvian's "The Healing Place" and closed my eyes. A few moments later, Tom declared, "We did it!" They'd dropped my heart rate to 108 using only beta and alpha blockers.

There was a lot of activity as people milled about, exchanging information and keeping an eye on things. Gradually people started to retreat, disconnecting me from this or that gadget.

And in a wink of an eye, it was over. Jocelyne returned, and as Katie watched she got the feeding tube blockage cleared. Problems solved (and thoroughly tired), I went to sleep.

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Wednesday, October 01, 2008

And Now a Word from Our Monster

Okay, so after yesterday i realized it would be near-impossible to chronicle my adventures linearly. So I spent a little time figuring out how I would talk about everything that's gone on since Day 0.

That plan is still a go, but first an important bit of information, which we learned of this morning.



Thank you.

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Tuesday, September 30, 2008

So, What's Rebirth Feel Like? Meh.

The Day, on September 16 as planned. I wore a brand-new Coyote/Joe Phat t-shirt (sneakily unearthed & delivered by Tamu & Vicky). In a textbook display of perfect timing, Vicky walked into the room just moments after the IV pump started transfusing the stem cells. It was bright and sunny, a perfect day for rebirth.

And, as (repeatedly) predicted, any excitement was purely conceptual. Unlike other clear or solid fluids I've had go through my IV pumps, stem cells and the fluid they're suspended look like textured particles. As a result, you can see the stem cells' progress as they flow through the tubes. After a few minutes of marvelling at that, though, Vicky and I got bored and found something else to do. In my case, that meant sleep—the Benadryl I'd been given earlier caught up with me and gave me a few minutes to get comfortable before gently knocking me out.

The next day started pretty much the same as always, and during my usual morning visitations I was informed that while the 16th was Day 0, the procedure had taken place late enough in the day that for the purposes of medication schedules, the 17th was also Day 0. Of course, I thought, my new birthday would start on one day and end on the next.

Anyway, this is about the end of when things were dull and unexciting. More on the subsequent 13 days later.

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Tuesday, September 23, 2008

Blood in Ottawa

This is just to keep count. Since my last accounting, I have received six more blood transfusions (for a total of 42) and one platelet transfusion (for a total of 13).

Sorry to keep everyone in the dark about Day Zero and the time since. I've just been so tired/feverish/immobile/occupied, depending on the time.

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Friday, September 12, 2008

Part of the Process

Before I write about the future, I need to correct the past. Not ten minutes after I'd written yesterday's post, my night nurse came in and hung a new 1L bag of saline on the stand. That meant that over a 24-hour period, I got just about 2.25 L of water (and 0.9% saline)—essentially, those 8 cups of water I need daily to deal with the busulfan. I thought about it and realized the binder (which I really must finish) is written for the majority of bone marrow transplant patients here, who are treated as outpatients. So that was to make sure they drank 8 cups of water while they were home. Inpatient that I am, it just gets put out in bags for me. Still, nothing wrong with a beverage now and then.

Now, on to the future.

In talking to friends and relatives, I've discovered there's a lot of misunderstanding about the process of what I'm going through. So, in an effort to keep from repeating myself, here's the broad overview.

From Sunday to Wednesday, I had four daily fludarabine treatments. It was pretty mild, as promised. I started the Busulfan as promised, and as promised it was a bit harder. Still easily tolerated—no nausea—but still almost guaranteed diarrhea (check) and a menace to liver and kidneys, as I mentioned yesterday. I had to take a bunch of extra drugs for that yesterday, and a few less extra drugs today.

The Busulfan (which I keep wanting to type with a 'ph') ends on Sunday, and then we give my body a break. It's important to remember that no matter how well I physically respond to chemo, it's still the same horror inside I described a while back; every chemo, including the two I did as an outpatient, weakens my body to some degree. This combo of chemo not only wipes out all my marrow, it wipes out any quickly-multiplying cells. That includes not only cancer cells, but other, perfectly normal and healthy cells that always multiply quickly.

Anyway, on the 14th post-Busulfan, I get ATG, an anti–T-cell medication. Yes, T-cells are designed to detect incoming viruses and other foreign intruders, but in this case we want to switch that ability off to let the new marrow to do its thing, hopefullly warding off graft vs. host disease (GvHD). Potential side effects from ATG include flu-like symptoms and allergic reactions. Joy.

On the 15th, I get started on my old pals fluconazole (anti-fungal) and acyclovir (anti-viral).

On the 16th, 48 hours after the Busulfan dose—the early afternoon—I'll be getting my transplant of stem cells.

First, an explanation for those who haven't been around the whole time. We talk about bone marrow, but what transplant recipients like me really need are healthy stem cells. Bone marrow contains plenty of the stem cells we need, but times have changed. In 70% of all extraction cases, we get the required stem cells through a process called PBSC (peripheral blood stem cell) extraction. This process is similar to donating blood, except the donor gets change: the blood is extracted through a needle, which takes the blood to an apheresis machine, which separates the stem cells from the rest of the blood. Anything that isn't needed for the extraction is returned to the donor. As for those remaining extractions, yes, those are actual bone marrow—a spongy red tissue.

Either way, my transplant works the same. Not through any kind of operation, but by pumping the stem cells/marrow through my chest catheter, the same way as I get my blood transfusions, for example. As I understand it marrow transplants take three hours or so (don't quote me on that); my transplant, which is of stem cells, is 60-80 minutes (two units, 30-40 minutes per unit).

"But wait," you might ask. "I have been following your posts, and you've mentioned that your catheter is a central venous catheter. That is, it goes into your heart to get pumped into the bloodstream. So how do the stem cells get to inside your bones, which is where they'll generate the new marrow?" Ah, that is the freaky part, the part that medical professionals marvel over but don't question, because hey, it works. The stem cells know where to go and they just get themselves there.

A moment's pause for the awesomeness of creation, please.

I will have photos taken of me with the bags, and maybe one or two of me standing next to the pump as the stuff is going into me. Other than that, I plan to curl up with a book or movie or something to pass the time. Aside from getting a new birthday (my fist birthday was made up of two multiples; my second is made up of two squares! Awesome!) it's really quite boring.

Around now I'll be put on tarolimus, an anti-rejection drug and another means of anticipating GvHD. If there is no GvHD, I'll only need it for 4–6 weeks. If there is GvHD, then I'll need to take it for at least 3 months before tapering it off.

A couple of days after Day Zero is when the excitement starts. As before, my counts (for white blood cells, hemoglobins, neutrophils, platelets, and other blood components) will start to drop, which is when I'll start to get tired (low hemoglobins) and particularly vulnerable to bugs without and within (neutrophils and white blood cells make up the immune system's front line).

This is when the doctors start really paying attention to me. At the first sign of a fever, for intstance—and I will get one—they swoop in to find out what's causing it, and if they can't do that right away they pump me up with a variety of antibiotics until they can. (Earlier this year, when I had that horrible fever that had me clutching ice bags to my body, a doctor casually informed me a few days later that what got me was a strain of e. coli that was resistant to the drug I was being administered. They switched the drug, and the e. coli didn't have a chance.)

The docs will also be scoping me daily for the first hint of mucositis, and monitoring its progress. The fear there is that the sores will go far enough down my throat that I will be physically unable to eat much—and we've been working on getting more protein and calories in me to get my weight and muscle mass back up. If it comes to it—and this happens in many cases, I'm told, no matter how much people eat to avoid it—it's time for a feeding tube to be inserted into my nose and down to my stomach. (The width of the tube is somewhere between the size of my MacBook power cable and that of the Ethernet cable. And apparently I won't feel most of it... but I figure I'll feel enough!) The advantages to a feeding tube are that it can be clamped off when not in use, so I can walk around. Also, I'm guaranteed to get the nutrition I need (and keep my stomach exercised) no matter how iffy the food is tastewise. But still.

Two to three weeks after Day Zero is the show we're all waiting for. That's when the new marrow should engraft with my body. Speaking to the transplant doctor, he said he's never seen engraftment not happen, except for one case. They boosted the patient's body with fligrastim (the same stuff they use to boost donors' stem cell levels if they're donating via PBSC), and everything went fine after.

Assuming everything goes well, I'll be out of here in early to mid-October. Of course, things aren't over yet. The first 100 days are crucial. I'll be spending much of my time in self-imposed exile at home, both working to get back into shape and resting. I'll have weekly checkups, but in Ottawa. I'll still have to be careful about what I eat, etc., as the immune system will still be rebuilding itself. There are a bunch of other issues as well, such as lichenoid texture (leather-like skin) which can happen a year after Day Zero. It's treatable and it does go away, but it's symbolic: I don't really and truly count my lucky stars until a year after the transplant, when all (most?) of its side effects go away, and my bone marrow biospsy comes back clear.

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Thursday, September 11, 2008

Busulfan Makes My Liver Quiver

You know how some days you've got a phrase or a song stuck in your head, no matter what? Despite tons of Raymond Scott, Red Hot Chili Peppers and, right now, some kickin' bhangra, I have been unable to get this earworm out of my brain: Your hat is stupid!" "My hat is AWESOME!"

Ahem. So, yesterday was the last fludarabine infusion; today, we switched to the more hardcore (which I mistyped as "hardcare," which still works) busulfan. In comparison to the fludarabine's 30-minute infusion, the busulfan takes three hours. Also, it's potentially more damaging to my liver and kidneys, which means I have to take a mess of extra pills on top of my gout-preventing allopurinol to help prevent any damage.

I also have to take in 8 cups of water a day, to help me just pee the damn stuff out. It's all reminiscent of my cyclophoshamide episode, but at least I'm not running to the bathroom three times in ten minutes—my own intake of water, juice, milk and Jell-O is supplemented by the 1.25 liters or so (a little over 5.5 of the 8 cups) of salinated water I get through my IV throughout the day. Oh, I also have to take two Zofran anti-nausea tablets (instead of the fludarabine's one.)

Yesterday I was wiped out from a painkiller I'd taken earlier in the day for my leg, so I'll fill you in now on what's happened since Sunday.

I've met a few more members of the team here. There is, of course, a transplant doctor (not the same hematologist I met with before I was admitted, though he is part of the team) who I've seen just about daily since Tuesday. There's also a social worker here to see to my mental health. (Stop snickering, you people in the back row! And the ones in the front, left and right! And in the balcony!) The pharmacist drops by every day to see how I'm doing.

Yesterday I had my first visit from the dietitian; after an extensive talk about the foods I need in my diet, the possibility of a feeding tube, and foods I'll need to eat more of or avoid when I'm out, we went over my menu choices, including other options on a blue-green sheet of paper she pulled out of nowhere, which includes Jell-O with every meal and tasty high-protein shakes they whip up here. (As a side note, I ate my spare orange Jell-O as I was writing that last sentence. I am telling you, this mini-fridge is awesome.)

The last new person I met was the physiotherapist, who is going to give me exercises to work my arms and legs daily so I at least don't lose any more muscle tone. Until she did her tests I didn't realize how much power I'd lost in my shoulders and biceps. They're like, well, Jell-O. My triceps and wrists are great, but jeez! I'm looking forward to her return on Monday.

The food here is still roughly tied with the stuff I was eating before. The egg rolls I had at lunch were so-so, as was the mushroom cream soup. But man, I demolished the plate of beef & mac, scalloped potatoes and wax beans at dinner, leaving behind a tiny piece of potato I didn't want to bother chasing before I went to town on the carrot and pineapple cake. After those and everything else I didn't even have room for the two digestive cookies I'd saved after lunch.

Prepped for a shower and showed Katie, today's day nurse, how we do it back home. We skipped the Saran-Wrap and I asked her for a blood sample bag, tucked the lines into the exterior pouch (exterior to the bag, that is—it's placed directly on my chest) and taped the whole thing up. After she left I turned on the Red Hot Chili Peppers, left the bathroom door open so I could hear them, and got myself clean. (Leaving the door open is also incentive to dry off pretty quickly and thoroughly.)

Incidentally, while I like all the nurses here so far, Katie is my favourite nurse for the simple reason that she always calls me "kiddo." It's like being in the comics I read and the movies I watched growing up.

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Monday, September 08, 2008

One Flu Over the Cuckoo's Nest

So yesterday we touched down at the hospital and got myself admitted. Almost immediately we were told that my floor was still under quarantine for parainfluenza. (I say "stlll" because it had already been under quarantine during our August visit—this is one persistent bug.) That meant I had to say goodbye to my family before I went through the doors.

Observations about my room: My room is only slightly smaller than the rooms I was in before, but the amount of usable space is about the same. The view is great. (The windows face south.) The bed doesn't have as many controls. There's a clock on the wall. There's a slightly beaten-up La-Z-Boy, but also a stool. There's a fridge next to the bed, about 32'' high x 20'' long x 20'' wide. I've got the usual side and night tables. I have my own shower in the bathroom.

The first nurse I had during the day was surprised that my chest catheter was a Broviac (a reaction that has been repeated several times since—they're not that common around here), and changed the claves—the blue rubber caps at the end—so they'd be compatible with their usual method for blood draws and infusions. The new claves are light blue and semi-translucent; very 1990s Macintosh.

I met with one of the attending physicians yesterday and we talked about what still ailed me, plus the medications I've been taking. I also got a binder (I was supposed to get it at our first visit) full of information about what happens before, during and after the transplant. I got about halfway through it before I was visited by one of the pharmacists, who spoke with me in detail about some of the things that are likely to happen to me in the coming weeks. It's interesting to note that the bone marrow transplant programme here is mostly run as an outpatient programme; people who live in the area actually spend most of their time at home. It was repeated several times (including in earlier discussions, and in the binder) that infections typically come from the critters that already live inside our bodies, which can run riot when there's no immune system to hold them in check. So there's little need to stay in hospital for the whole process.

Started the chemo yesterday—my old pal fludarabine—just two hours after I got in. Each dose is about 30 minutes, and I get one a day for four days. Then it's four days of busulphan.

Nothing else exciting about yesterday; got Rogers Portable Internet set up in no time flat, and spent most of the evening going through my e-mail backlog.

Today was similarly dull. I found out early on that my hemoglobins were low (lower than last week) so I got two units of blood (blood transfusions 35 and 36; 48 overall) around lunchtime.

Speaking of lunch, it's hard to say if the food here is better or worse than before. The gravy they put on the meat here is better, but there's still too much; the vegetables aren't overcooked; the mashed potatoes are better; and so on. Here they don't keep kosher, so I have a few more options available to me, like the ham and cheese sandwich I had yesterday. Still, I get the feeling I'm not going to get dishes like Moroccan chicken with couscous here.

One funny thing about the meals here: as before, every meal comes with a sheet of paper describing what's on the tray. This one is reasonably detailed, except for one thing: it never says what the main entrée is, instead listing it just as "main entrée." So it's like a little surprise at every mealtime. Hey, what's under the lid?

Actually, after today there won't be any more surprises, I think. Late this morning my nurse and I planned out all of tomorrow's meals. And by "planned out" I mean that she gave me a series of options for each part of the meal and I picked them, right down to salt and pepper packets. So we'll see if I really should have picked the beef stew over the quiche Lorraine for dinner.

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